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Wednesday, May 2, 2012

Good Morning!

Pin It I was up early this morning, it has been hard getting in to a routine with the littles and getting ready before they make their appearance  in the morning. I have found that I must get up, ready and have my coffee time with Jesus in the morning before the littles get up. If all of that happens before anyone opens their eyes it is a FABULOUS day!!! This is my job, being a mom with many hats. A job I would not trade for the most prestigious job on earth! I have found the best way to do my job well is to start it off right. So today, as they last big headed out the door and still no sign of any littles open eyes, I thought I would post some happenings from the last 24 hours.

Ivy has some things she just loves now, and we try to do the things she loves whenever she is awake! She loves bike rides!!! She loves walks outside in her stroller! She loves water anything water related!
I put her on the floor with a mixing bow of water, a few pieces of play food and a big mixing spoon and she is happy for a very long time. She usually ends up with her tiny feet inside the bowl!
 We are so excited that today is the official day that she can actually be submerged in water so no more open drain, running water baths. Today we will plug the drain, woo whooo! 
She loves birds! So we went to feed the ducks yesterday evening and Lexi caught 3 fish!!! She loves her lentils made by the sweetest gal ever, Chris Hart!!! She eats them every day. Only about 5 bites at a time but I just offer them up all day and even when she shakes her head no, she still can not resist taking a few bites :)
She loves baked potatoes with a little salt. Again, just a bite or two but we eat all day haha!
She loves to cuddle with mommy! I mean loves it! I don't know how I ended up with 2 babies that are so affectionate and lovey? (well, I guess I do, thank you Father!) I sure am grateful! Both raised in very different orphanages and very different situations, but both so connected and attached!
Eating a bite at a time, just the things she agrees to, and just a bite or 2 has become the norm around here. I have adjusted to the all you can eat buffet that resides in my kitchen from 9am-7pm and it just seems, well, normal now. 

Many of you have been concerned by Ivy's diet and have had questions in regards to the fluid restriction. I will share again what is going on with all of that.

swalowing dysfunction and pulmonary aspiration often occur in patients receiving prolonged ventilation. 

Even more chance of this if the child was ventilated multiple times. (thus the reason I always wanted her off the ventilator and sunk with fear when she was put back on the ventilator.)

And... damage is even more probable if there was an emergency ex tubation followed by re intubation as happened to Ivy after her diaphragm plication and pacemaker placement.

When a child aspirates refluxed food or fluid that has been 

mixed with stomach acid (i.e., aspirated coming up) it can 

likely cause an aspiration pneumonia or damage the lungs. 

Fat: Food or liquid containing fat molecules  is more 

dangerous to the lungs, and may trigger pneumonia even 

faster.  This is because the lungs are used to handling water 

in the air we breathe and can release it more easily than a fat 

which is foreign to the lungs.

Ivy aspirates when she drinks fluid that is not as thick as very 

thick honey. She then sounds like a bad connection on the 

radio when she breathes for a very long time. And it hurts her. 

She can NOT have fluids. Even milkshakes or things thickened 

with anything that has the potential to melt are very 

dangerous for her.

Ivy is on a NO FAT Diet. She can have up to 5 grams of fat a 

day, but since some things have .05 grams of fat and 

anything with less than .05 grams of fat is considered fat free,

we just keep her away from anything with more than .05 

grams of fat. Always!


Ivy has Chlyothorax. 

This is a type of pleural effusion. It 

results from lymphatic fluid (chyle) accumulating in the pleural 


Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. The most common causes arelymphoma and trauma caused by thoracic surgery.
Chylothorax usually results from diseases that cause obstruction to the thoracic duct, preventing lymph from draining normally into the venous system.
Ivy's was caused by them accidentally cutting a lymph node during her pacemaker placement and diaphragm plication. The diaphragm plication (surgery to correct her paralyzed diaphragm) was necessary  because they accidentally cut a nerve when they performed her open heart surgery to corrected her heart defects. All of these complications are a bummer and make my heart break for my girl, but please know that her heart is just the size of a walnut, her organs and her body, ARE TINY!!!!! Our doctor had so much to correct in that 13 hour window. So much going on with baby girls heart, much of which we understood may not be correctable. But by the grace of God and the leading of the His hand on the hand of our surgeons hands, our baby has a corrected heart defect! Corrected, working, blood pumping heart!!!!!! We are so grateful for this and way too grateful to let these current difficulties turn our eyes from the gifts we have already received!! 
 So here is what we were told~
If the patient is on a normal diet, the effusion can be identified by its white and milky appearance, as it contains high levels of triglycerides. Ivys drainage from her chest tube was milky :(
The condition is rare but serious

Since the mechanism behind chylothorax is not well 

understood, treatment options are limited. Drainage of the fluid 

out of the pleural space is essential to obviate damage to 

organs, especially the inhibition of lung function by the counter 

pressure of the chyle. Another treatment option is 

pneumoperitoneal shunting (creating a communication channel 

between pleural space and peritoneal cavity). By this surgical 

technique loss of essential triglycerides that escape the 

thoracic duct can be prevented. Omitting fat (in particular FFA) 

from the diet is essential. Either surgical or chemical 

pleurodesis are options: the leaking of lymphatic fluids is 

stopped by irritating the lungs and chest wall, resulting in 

swelling and closure of the pleural space. The medication 

octreotide has been shown to be beneficial and in some cases 

will stop the chylothorax after a few weeks

We pray that by following the very strict NO FAT diet, Ivy will

not need further surgery. Will you join us in prayer for that?

Off to wake the littles and head to the doctors! It's a GREAT 

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Lee and Sarah VanGrunsven said...

I'm still just in awe at our Fathers mercy and love for little Ivy! :-)
I love the picture of them together, SO SWEET:)!

jennifer said...

Just catching up on sweet Ivy! I'm so thrilled things are going so well :) They are so precious!!

Luciana said...

That sweet munchkin will be eating everything in no time. So happy you're updating. Beautiful pictures below.

K said...

Thank you so much for the great information! It helps me understand better what you and Ivy are going through and helps me leave comments that are more appropriate. I think it also lets others see what life can be like with a baby with a heart condition and perhaps, after seeing your success, they would be more open to adopting a baby with a serious heart malformation.

May I ask a little more about the no fats? Obviously, a growing baby needs fat to develop the nervous system. So, is the no fat restriction temporary? Basically, I'm asking if the condition with the open lymph duct can heal by itself? I will definitely pray for that to happen!

Anonymous said...

Continuing in prayer for you all ,so great to see the pictures of Miss Ivy and being all PINKILICIOUS!!! so dear! Cathy In Illinois

Teresa said...

What an awesome mommy!! You have trusted in God and the surgeons to repair sweet Ivy's heart and now you are nursing her back to health!! I pray her special diet will be a distant memory for you in the near future but until then keep doing the amazing job you are!!

Anonymous said...

The good news is that a chylothorax can resolve with time...and keeping Ivy on a low fat diet will help with this (as I see you totally understand). Its a miracle (trully) that she hasn't needed to be on IV happy for you and for Ivy...Keep up the great job!!!

deborah said...

So, how does Ivy get water into her body, which is essential to life? Just curious. Thanx so much for the explanations.

Kristi said...

Thanks for all of the medical background and information. Makes a lot of sense knowing all of this!! Will pray that Ivy's diet helps her heal and not aspirate!!

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